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Notes from the Home - July 21, 2014

Betty lives in the apartment
above me. She is a tall woman, five-ten or so, and wears shapeless dresses,
like those worn by frumpy housewives in the 1950s. She walks slowly and a
little stiffly. Betty’s white hair and wan complexion give her an almost
ghostly appearance, like a ghoul in a small-budget horror film. But ghouls
never smile, and Betty does. She smiles all the time.

Betty stopped me in the hall
one day and asked if her television disturbed me at night. I told her it never
had. “If it does, give me a call. I go to bed about the time most people get
up,” she said and went on her way.

Betty’s name came up in a
conversation with Eleanor, and I told her what Betty said about her sleep
habits. It turns out, Betty was a nurse and worked midnights her entire career.
When she retired, she stayed on her third-shift schedule.

I found out last night that
Mildred, who moved into the apartment across the hall about a month ago, is also
a retired nurse. I noticed her keys hanging from the keyhole in the door
handle. I knocked; she answered and was duly embarrassed when she saw the keys.
“He [the poodle with a dirty white coat with whom she shares the apartment] pushed
the waste basket in front of the door,” she said. “When I got back from dinner
and opened the door, I heard it tip over. I was afraid something might have
spilled and rushed in to clean up the mess. There wasn’t a mess. Guess I forgot
the keys, though.”

After we’d talked for a few
minutes about this and that, Mildred said I should feel free to call her if I
need help with anything. My lips said, “Thank you,” but my eyes must have said,
“You’re eighty-something and you look unsteady when you walk.” “No, really,”
she said, “it’s been a few years, but I was an RN. If you ever need help,
please let me know.”

Covenant Woods has its share of mean-spirited old dames.
It’s nice to know the lady across the hall isn’t one of them.

The two hour drive to the
Emory Clinic no longer thrills me. I don’t travel well these days. Getting into
the car is getting harder and harder; my butt commences aching earlier and
earlier; and by the time we get to Atlanta, my legs all but refuse to move,
making the transfer from the car to the wheelchair dicier and dicier. Once at
Emory, I seldom spend a half hour in the company of medical professionals, and
that includes the five minutes with the nurse who takes my vitals. Then it’s
back to the car for the two hour trip home. It’s a long day, indeed.

When I was preparing to move
south, I asked Dr. McKee, the truly marvelous doctor I’d been seeing at the
Cleveland Clinic’s Mellen Center for nearly five years, about finding a doctor
down here. He suggested I check the “Find a Doctor” feature on the Medtronics’
website – Medtronics is the company that made the baclofen pump that resides on
the right side of my abdomen. The nearest ones were at the Emory Clinic, ninety-eight
miles from Columbus, according to the website. I called, made an appointment,
and have been going to Emory every few months since.

In October, I went there to
do the pre-op stuff for having my pump’s innards replaced. As part of the
process, a nurse asked me a long series of questions. My answer to one of her
questions included the phrase “at the Cleveland Clinic.” I was just trying to
answer the question, but she must have thought there was a haughty
when-I-was-at-Harvard tone in my voice and snapped back, “No, we’re not the
Cleveland Clinic.” No they’re not, not by a long shot, at least in my
experience.

When I go to Emory to have
the pump refilled, that’s exactly what they do. That’s it; they refill the
pump. The doctor never does an assessment, never bends my leg at the knee to
see how stiff it is, never asks me hold my leg out as far as I can and try to
keep it there while he presses down on my foot to see how weak I am. The only
question he ever asks is, “What do you think? Should we increase the dose?”

Which is why, when I went to
see Dr. Miller, a GP, two weeks ago, I asked him if there was a neurologist in
Columbus he’d recommend. He referred me to Dr. Verson, who saw me last Monday. It
was a good visit. He seemed interested, if not in me at least in what ails me.
He wondered aloud why I was diagnosed with primary-progressive MS; he thinks
secondary-progressive might be closer to the truth. When he explained
secondary-progressive MS, it sounded a lot like the explanation I was given
eight years ago for primary-progressive. Perhaps it is one of those
distinctions without much of a difference. In any event, it is reassuring to
know the doc is thinking about MS as I know it.

One of his concerns was that
I might have neuropathy. Two days later, I was back for an EMG –
electromyography – administered by a guy named Mark, who said, “I spend all day
sticking people with needles and giving them shocks. I love my job.” After he
spent a half hour doing his job on my legs, he said I probably don’t have
neuropathy. The weird, burning sensations I’ve been having in my feet are
probably the result of a pinched nerve in the lower part of my spine. Friday, I
see the local phlebotomist and then go through another test of some sort.

All the poking and prodding
isn’t going to cure me. But maybe, just maybe it will result in something that
will give me a little boost or make doing some formerly easy task a little
easier again. That is not likely to happen when all the doctor does is fill the
pump with baclofen every few months.

And, oh, by the way, Dr. Verson said there
are some local doctors who can fill the pump. That will make life easier for me
and for Russ, who has been doing yeoman service for the last two years, hauling
me to and from the Emory Clinic.

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